BC Government MUST Reinstate Funding For A Disabled Child's Medication.

And perhaps it is time to discuss a declaration on the rights of the dying.

For some time now I’ve been pondering the idea for a declaration on the rights of the dying. The BC Government’s decision to defund the essential treatment of Charleigh Pollock has made me more convinced of its necessity.

Here are a few quick facts you need to know about the situation if you are unfamiliar with it.

• Charleigh Pollock is a nine-year-old girl living on Vancouver Island, British Columbia.

• She is the only person in B.C. with Batten disease, or neuronal ceroid lipofuscinosis type 2 (CLN2), which is a rare terminal disease that among other things can cause multiple seizures per day.

• Her mother, Jori Fales and her family physician say that she was benefitting from treatment with Brineura. “Brineura slows down the progression of her disease. It has ended her seizures. It keeps her quality of life thriving. She continues to live the best that she can with this disease,” Fales said to CHEK News on June 13.

• Brineura is very expensive. It is delivered via infusion and costs about $1 million/year.

• The BC Government gave the family one day’s notice that they would no longer fund Charleigh’s treatment. They said the decision was based on the findings of Canada’s Drug Agency. “But, Canada’s Drug Agency notes in its report that “evidence is limited regarding advanced disease and when to stop treatment.”

• Neither her mother or her care team were involved in nor agree with the decision to stop treatment. A leading researcher called the decision of the BC Government “unconsciousable.”

• David Eby is digging in, bizarrely claiming that the care decisions should be made by doctors not government. But it is government that is declining to fund the medication despite the child’s physician and a leading expert in the disease saying the medication should be continued.

• Additional links for reading are at the bottom of this post, along with a link to a petition which I ask you to sign and circulate. Charleigh is running out of time.

Certainly part of the unspoken reason for cutting the funding for treatment for Charleigh is that she is a disabled child. But, given my own experiences and observations, I also think the fact she has a terminal condition plays heavily into this. Like Tracy Latimer, she, in the ethos of Canadian society, is not fully alive and already almost dead.

We are a strange society. Among other things, defence mechanisms like avoidance and denial are baked in as part of culture. We declare dominance over what we cannot control. We pretend actions motivated by fear are examples of fearlessness. We eschew acknowledging our vulnerability - also known as our humanity.

Enter the dying.

Number one thing you need to understand about dying is that it is part of living. Dying does not exist in the realm of the dead. There are no dead living people and no dying among the dead. Dying is a process. Death is an end.

But in our society the living are deeply uncomfortable with the dying.

Fundamentally I would argue this all relates back to, and is a reflection of, the economic and political system, but I will leave my thoughts on that for another day.

Disdain and discomfort with the dying is similar to ableism, perhaps even a particular sub-category of it, but it is also distinct. For one thing, while people can live their entire life without becoming disabled, they can’t escape the inevitability of death. If you are living, you are also simultaneously dying. We have constructed dividers, but we are dividing ourselves by expected expiry dates.

The formula for this is pretty straight forward. People want to push the idea of death out of sight and out of mind which means pushing the dying out of sight and out of mind. And it also means insisting *they* are different from you.

But they aren’t. Dying people are alive.

This is not to say there is not a particular state of living that we call dying which is different in various ways from living without consciousness of dying but much of who and what we call dying does not fit this description.

Dying is the final stage of living. In the final leg of the journey, known as ‘active dying,’ the body goes through the process of shutting down. The light of life begins to dim. But as long as their is a light, there is life.

And most importantly, having a terminal condition does not necessarily mean that person is dying anymore than the person without the terminal condition. Someone with a terminal condition - meaning that they have a condition that cannot be cured, will worsen and is expected to lead to their death, can live years, decades even with their life light shining as bright as any.

The living who are in denial about their own vulnerability, mortality and the general uncertainty being a living being necessarily entails, should have no right to arbitrarily extinquish the lights of those who have a projected expiration date (which is, obviously not certain as people can both outlive their prognosis or die by other means - like a motor vehicle accident - much earlier).

I could say a lot more about how being classified among the dying has affected me, including how it became internalized and caused me to spend the last decade and a half as if I had no right to be among the living, no right to the dreams, experiences and expectations that living people have, that I made no plans for living, let alone outliving while waiting for my expiry date. But that is an essay for another day. Today, I want to keep the focus on Charleigh Pollock.

David Eby rolled his eyes when asked about Charleigh Pollock yesterday. He had a pat answer at the ready and for too many people it is an answer that will suffice because to them Charleigh is already not fully alive. She is, in their minds, already almost dead.

The dying have a right to life. The dying have a right to every single second of life they have left to live. The dying have a right to receive the funding necessary for LIVING - which includes care, support, and treatment.

Just because someone can’t be cured doesn’t give the state the right to throw us away. How dare David Eby and his government defend this decision which is not based on science no matter how much he tries to spin it that way.

If I am dying and you strike me with your vehicle, you have still killed a living person. You have still deprived me of life. If I am dying and I am murdered, the murderer should not walk free. If the BC Government does not change this decision they are causing unnecessary suffering and possibly cutting short the life of a living child.

The dying are alive. Killing us more quickly - via MAiD or denying us treatments necessary to live - will not protect anyone else from death. In fact it will do the opposite and put everyone at greater risk of being among the dying prematurely.

Please sign the petition demanding BC Government reinstate funding for Charleigh’s treatment.

Rob Shaw: A dying child deserves more than a B.C. politician passing the buck